Hello everyone,

I'm new to the list -- actually, I've been "lurking" for a few weeks,
soaking up all the good information and support here -- and am just now
getting enough of a grip as a new, first-time mom to attach a pic, post
a message, and get more involved.

Our beautiful baby girl, Ivy, was born January 2, with a unilateral
cleft lip and bilateral cleft palate. We knew about her lip from an
early ultrasound,  but weren't sure about her palate until we held her
in our arms. As we also expected, Ivy was (is!) quite small. She
weighed 4 lbs 7 oz at birth, and is just now, after some start-and-stop
gains, passing the 6 lb mark. Filling her with calories (pumped breast
milk -- of which mom doesn't produce nearly enough -- supplemented with
formula in a Haberman feeder) has been our main focus, day and night,
and it's been quite a challenge. Early on, she was too sleepy to eat
much. Now, she has some sort of recurring problem that has been
tentatively diagnosed as acid-reflux (I've been reading the Feeding and
Swallowing thread with great interest). We've been treating her with
Prevacid, which seems to help in general, though she still has bouts of
screaming every time milk hits her throat, which can make the long
feedings heartbreaking for mom and dad and exhausting for all. Other
than that, however, she's a happy, delightful, curious, perfect (of
course!) baby girl.

Assuming she doesn't have another setback in weight gain, Ivy will have
her first surgery in just a few weeks -- March 23 -- with Dr. Rosenblum
and the team in Norfolk, VA.

In short, as I know you all know, the last couple of months have been
an amazing, tiring, all-consuming, blissful adventure. We've been
overwhelmed by the support and love Ivy and we have received from
friends, family, and new friends we've made in the cleft community (Hi
Lee Lupton!). I'm so glad to have found this pocket of that community,
and look forward to getting to know you all and sharing more.

Paige

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Awww! She's so sweet! I hear ya on the weight gain. Our son took what it
seems like
forever to gain enough weight to make it to his first surgery. His first
surgery didn't occur
until he was 5 months old, and he had just made the 10lb mark at that point.
He was 4 lbs,
4 ozs at birth, so hang in there, it will get better later on. :) Welcome
aboard. I'm Cat,
mom to Darren, born with unilateral cleft lip and bilateral cleft palate,
and some other
unique features. :)

~Cat
Mom to Bobbi & Darren
2-24-95 & 2-27-02
www.angelfire.com/pa2/cateyes

Paige,
Ivy is BEAUTIFUL! Thanks so much for sharing!
Boy do I remember that pumping/feeding and every once in a while grabbing a
few minutes of sleep schedule. It had to be the hardest thing I'd ever done-
but the most rewarding at the same time. The time really does fly- the older
she gets the easier it'll be. My daughter Marissa's unilateral lip repair
went really well and aside from her sleep schedule getting messed up for a
couple of weeks- she was wonderful post op. I swear the child had a much
easier time with the surgery than mommy and daddy did! We were in the same
boat- Marissa being our first child too- though we didn't find out about her
cleft until after she was in our arms. Be grateful that Ivy's your first, I
know that moms' who've had 'normal' experiences with their other kids and
then have a baby with a cleft have a much harder time adjusting. I've always
felt that since I had no idea what I was doing (being the first time mom)
that the 'cleft' stuff was 'normal' to me... I guess that can sound twisted
but it really made it easier for me. I was able to pump for Marissa for 14
months- something I NEVER could have done if I had to work or if I had other
children to tend.

 Marissa's experience made it so much easier when we found out that our
second child, Dallin was going to be cleft affected as well. We saw his
bilateral cleft in the ultrasound since we knew that it was a possibility
after big sister. Marissa was the first in both of our families to be born
with a cleft and Dallin is the second. We were thrilled to find out upon his
arrival that his palate was intact- so our children's clefts are seriously
backwards with Marissa a unilateral lip and bilateral palate and Dallin a
bilateral lip with palate intact :) I know this sounds really weird- but
aside from the early couple of months (1-2.5) pumping was way easier for me
than breastfeeding. I didn't realize how much I appreciated having daddy
help with feedings and having the ability to 'get ahead' of his feedings
until there was NO ONE else who could feed Dallin. I kept it up with Dallin
until he was 14 months too- I felt I had to be fair for some reason :) Oh
the mommy guilt!

You've come to a fantastic group- though I don't know if you've seen that
we're switching to a new interface. Debbie is transferring our membership
from the Google group to a new interface. All new email should go to
cleftadvoc...@listserv.galists.org I'd forward this one over there if I were
you so everyone else can oooohh and ahhh over your adorable babe :) and
welcome you even more :) We all do the best we can with responding to posts-
so no worries if you get sucked back into the hectic baby schedule- we're
all here for you whenever you need us!
Best Wishes!

***********
Emily Angell
Marissa 4 Years old UCL/BCP
Dallin 2 Years old BCL, Utah